Worried

Hello All! I am new to this site and want to first thank everyone for the warm welcomes I received. I hope everyone is having as pain free a day as possible.

So the quick of it is I was told by my main NS that I needed the decompression, after putting in a shunt for the IH in Feb. My husband wanted me to get a second opinon so I went to Johns Hopkins. I saw the dr yesterday and he confirmed I needed the surgery. In fact, probably didn't need the shunt but he stopped short of saying that completely. I really like this dr but I think I keep making excuses as to why I shouldn't have the surgery. While he agreed there is no cure for chiari because it is anatomical, he said the surgery would rid me of the symptoms. He also said he has only ever had to do a 2nd surgery on 1 patient and that was 12 years after the fact and due to scar tissue. He is very knowledgeable and has definitely done it more than the first NS. I went to call today to schedule and couldn't. My husband said I just need to give myself some time to digest everything. But I'm so very scared. I know I need the surgery but having a hard time with the fact of everything they do in the surgery. My doctor is a top doctor so his skills do not worry me. Just the thought of being on the table for a few hours and someone that close to my brain.

Well, thanks for listening.

Deanna

Deanne,

It's natural to be nervous it's a very serious surgery. It should not be taken lightly or rushed into if you aren't sure. Confidence in your surgeon and the type of decompression he/she are doing is key. You want to find someone that does the surgery frequently and that you feel comfortable with.

The surgery is not a cure it's a treatment and outcomes vary. I don't think a doctor should promise that it will "Rid you of your symptoms" He may have been trying to overcome your objections. Everyone is different and we all have different levels of symptoms being alleviated.

I didn't have a choice because I was so bad after years of misdiagnosis that I couldn't wait to have surgery and I am one of those that needs a revision after 11 years because of scar tissue but my surgeon said the scar tissue has been there from at least a year out from surgery. It just took 8 years to get an answer from an expert. My surgery helped my blinding headaches and the pressure in my head, helped lessen my neck pain and upper back pain and initially helped my gait. I don't regret my surgery.

It is a very involved surgery with a long recovery period but done by an experienced NS it is very safe. We are all here for you if you need questions answered, cheering up, shoulder to cry on ect....

Wendy

Thank you all for your thoughtful comments. They did put things into perspective. I have confidence in this NS and am planning on scheduling the surgery tomorrow. Looking at sometime in September. Keeping my fingers crossed!

Thank you all again!